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Help! I need somebody!

And, not just anybody. I need a doctor who will treat my thyroid. Who knew it could possibly be this hard? But, I’m getting ahead of myself.

I waited with a fair amount of restless impatience on Wednesday for my latest round of beta results. And, not just beta and progesterone, either. I was pretty annoyed on Monday when I discovered my first beta draw didn’t also include a TSH check. It’s been a standard part of my workup with every other (negative) beta for the past 6 months, so why they left it off this time is beyond me. So, when my blood was drawn at 7:30am I requested that a TSH be added. I got minimal push back from the nurse, but I’m used to fighting. Anyway, blood exited the veins, and I was told I’d hear something by 11am. At noon I hadn’t heard a thing so I gave in and called.

That phone conversation is hard to paraphrase, so let’s just do this Shakespeare-style.

Me: Yes, I’m calling for my blood work results from this morning.

Nurse: Uh, yea. Still pregnant. When do you want your ultrasound next week? Wednesday, Thursday, or Friday?

Me: Wait, what? What was the value? What was the TSH? How’s the Progesterone?

Her: Um, I gotta open your chart back up. Gimme a second. [Gum smack, gum smack.] HCG was 256. That’s fine. When do you want your ultrasound and who is your OB?

Me: [Doing the math on the fly] But, that didn’t quite double from my 139 on Monday. Are we really not doing another beta? I won’t get anything else until over a week from now? What about the other values?

Her: I don’t know what to tell you. Everything’s fine, so there is no reason to retest. You can see the rest of your results in the portal later today. I already closed your chart again. Call your OB.

Me: I don’t have one!

Her: Well, that’s silly. Get one. We will release you at 8 weeks and won’t help you from that point on.

Me: But I’m barely 4 weeks! I’m not calling one. Not yet. I’ve had to cancel three OB appointments before due to miscarriage. I’m not doing it again.

Her: Well, I don’t know what to tell you. How about next Thursday for your ultrasound? 7:30?

Me: [In tears] Wait what?

Her: We’ll see you next Thursday, October 24 at 7:30am. Call an OB!

After I was hung up on I sent an email to my boss saying I suddenly didn’t feel good and would be going home for the rest of the day. I stayed home in my pajamas crying for the next 36 hours. The Mr. and I spent an additional 90 minutes screaming at one another last night about how many more miscarriages we can possibly handle. He said things like, “I just don’t have the energy to watch you miscarry 9 more times with 9 more perfect embryos!” I heard things like, “Why did I marry this barren shrew who keeps killing my children?” It was good times.

Equally good was what I found when I logged in to my patient portal teary eyed on Wednesday night. Yes, the HCG went from 139 to 256. Perfect is doubling in 48 hours or less. Mine was on pace to double at 54 hours. Not remotely terrible or doom and gloom depression-worthy, but that’s still the emotion it evoked. After 4 years and 3 prior losses anything less that absolute perfection generates worry. I’ve been full of worry ever since.

But, it turns out, the beta was just the tip of the worry iceberg. My amazing progesterone on Monday of over 40? Yup, dropped to a pathetic 19 despite daily Crinone suppositories and PIO injections. Oh, and that TSH they had no intention of running? Yea, about that…

When a woman with hypothyroidism becomes pregnant, the dosage of L-thyroxine should be increased as soon as possible to ensure that serum TSH is <2.5 mIU/L and that serum total T4 is in the normal reference range for pregnancy. Moreover, when a patient with a positive TPOAb test becomes pregnant, serum TSH should be measured as soon as possible and if >2.5 mIU/L, T4 treatment should be initiated. Serum TSH and total T4 measurements should be monitored every 4 weeks during the first half of pregnancy and at least once between 26 and 32 weeks gestation to ensure that the requirement for L-thyroxine has not changed. [Emphasis mine]

When I started this cycle, my thyroid was well controlled on my usual Synthroid dose. On 9/18 my TSH was a beautiful 0.49. My redraw on Wednesday? 5.69?!?!?!

On Thursday morning, I wrote my endocrinologist asking what to do. On Thursday afternoon they left a message on my work voice mail (good thing I skipped work given my hysterical I’m gonna miscarry again crying fit, right?) saying they couldn’t go on what I told them, but needed to have my RE fax lab results to them. My RE closes at noon on Thursday. Last night at midnight I wrote a hysterical email to my RE’s nurse basically saying, “Why isn’t anyone paying attention to me? Why won’t you help me?” (Yes, it was about that eloquent.) This morning she wrote back saying calm down, we’ve faxed your results. Later this morning a message arrived from my endo’s nurse saying, “We don’t treat pregnant patients, you will need to talk to your OB. Who are you seeing?” I wrote back with the same damn, “I don’t have an OB and I don’t plan on having one!” I gave my RE’s nurse on Wednesday. And, that was that.

So, basically, by 2 this afternoon, I was left with the following:

RE won’t treat my thyroid since I have a thyroid-specializing endocrinologist.

OB won’t treat my thyroid because, well, I don’t have one. But, even if I did, my experience has been that OBs won’t see patients this early anyway, so what good would it even do to have one?

Oh, and my rural PCP (who isn’t even in the office on Fridays) thinks any TSH under 10 is hunky dory.

Whee!!!

I escaped home from work and started making phone calls again, desperate to get some sense of resolution before the weekend (my 30th birthday weekend!) began. It went something like this:

Accept I must call a fucking OB at all of 4w4d pregnant. Hyperventilate. Explain situation. Sound like a crazed woman. God bless the patient receptionist who listened and cared. Unfortunately, listening and caring doesn’t solve the fact that I’m not their patient, they’ve never seen me before, they don’t have my blood work, and it’s far too early to book an OB appointment with them. She encouraged me to push my endo a little harder, but, after I told her I was seeing the thyroid center attached to the same teaching hospital their practice is attached to, she acknowledged they tend to not want to treat pregnant women for fear of liability. Good thing I haven’t had about 5 conversations with my thyroid doc in the past 18 months saying I was specifically there so that they’d manage my care through pregnancy, eh? Anyway, sweetheart scheduled me in as a new GYN patient (NOT an OB patient) for next Thursday. Yes, the same day as my ultrasound. But, at least since it’s a GYN appointment I won’t have to cancel it if I find out that morning I’m miscarrying, right? Always looking on the fucking bright side. That’s me alright!

Try and call endo and get an answer that isn’t simply “Talk to your OB.” Dial. Press 0 to speak to a member of the staff. Silence. Dial back, press 0, silence. Dial back, press 1 “if you’re a physician or a physician’s representative” (what the fuck do I care at this point?), receive error message that the extension is not available so try another extension. Cry. Give up.

Call RE’s nursing line. Get “Why don’t you have an OB?” heartless bitch nurse on the line. Simply ask for the slightly less bitchy nurse I sent my emotional breakdown of a portal message to last night to call me back when she has a chance. Hang up. Cry.

30 seconds later, slightly less bitchy nurse returns my call. She says, “Honey how are you?” I cry. And, then cry some more. She orders me a prescription for 150mcg to replace my 112mcg of Synthroid. She assures me there is nothing I can do (or that they are really willing to do) between now and next Thursday. She tells me to always feel comfortable asking for her directly. As I whimper out a, “Sorry I’m being so unhinged and irrational,” she responds back, “Honey, you have every reason to be irrational right now. You’ve been burned enough times before and you won’t feel alright until you are holding this baby. What else can I do to help make this better?” I just start sobbing even harder.

I call and set up an appointment with an infertility counselor. Yea, you guessed it, it’s scheduled for next Thursday…

Endo calls back. He’s ordered a prescription for 137mcg and apologizes for the inconvenience. He just, “Doesn’t like the confusion of handling pregnant women since usually OBs want to make those calls.”

So, I’ve gone from self-medicating by cutting my pills in half, to shortly having an arsenal of Synthroid prescriptions in different doses in my bedside table. Not quite sure what the pharmacy is going to make of me, but that’s a call I’ll make for another day. I can’t handle more phone battles right now.

But, let’s look on the fucking bright side, right:

I theoretically have an OB/GYN again for the first time in a while. (Talk to me about whether this is a bright side when I have to face sitting in that waiting room again on Thursday.)

I will shortly have a full party array of Synthroid in all it’s beautiful colors.

My RE’s nurse has once again underlined that gold star next to my name denoting, “This chick is batshit crazy, handle with care!”

I managed to stop thinking about miscarrying for nearly an entire day since my focus instead was directed toward my thyroid.

It’s Friday.

I always wanted to have kids by 30, so at least I’ll be able to say I was technically pregnant on my 30th birthday this Sunday. Close enough, right?

Like this:

19 thoughts on “Help! I need somebody!”

I totally know how you feel about that big 3-0. I never wanted to be as “old” as my parents were when they had me. I’m the oldest and my mom was 32 when she had me.
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My 32nd birthday is in June. So I’ll be no younger than a 32 year old mother. If I ever get to be one, that is.

Wtffffffffff!!! I seriously want to throat punch everyone who is making this so much more difficult than it has to be. Ahhhhhhhhhhhh! I am anxiety ridden for you. Wishing you all the best. Hugs & hang in there.

I’m so pissed at those doctors. Especially the endocrinologist. I’m glad he finally decided to help. What an…
Anyway, sending lots of prayers your way. Everything’s crossed for you, hubby and that baby!
Happy birthday, young lady! Sorry, I couldn’t resist, I do have 10 years on ya!
Lots of love,
Mel

Oh. My. God. This is the most ridiculous thing I have ever fucking heard. Like you said, what good would an OB do? They wouldn’t see you right now anyway! A whole bunch of MORONS. They could at least pretend to pick up on the desperate woman just wanting to be told she isn’t going to miscarry again. Fucktards. I’m sorry!

Wow, I’m sorry you had to deal with all of that! There are so many ridiculous things about this story. The pressure to get an OB when they don’t even see you until 8-10 weeks, the fact that the endocrinologist wanted the OB to prescribe your Synthroid (I can see them wanting to consult with your OB, but aren’t they supposed to be the experts?!), that she “already closed your chart” so she couldn’t give you the other results (um, open it again!), that your PCP thinks any TSH level under 10 is fine…. etc. How frustrating!
If it makes you feel any better about the progesterone though, I don’t think Crinone raises the progesterone level in your blood since it’s applied vaginally and is absorbed there. At least that’s what my RE told me.
I hope you have a perfect ultrasound & that all these doctors stop being jerks!

Yea, I think that’s exactly right about the Crinone. It’s all relative, though, right? I mean, I would have been THRILLED with a P4 of over 19 during prior cycles, but the fact that that first draw showed it over 40 and then in 48 hours it dropped to 19 is what really freaked me out. That seems like a huge drop in such a short time. Anything to fixate on though, right?

Wow, I’m SO sorry you’re being treated like that *hugs* (I want to hug you for real!) I can’t believe they’re being so insensitive and dismissive… I’ve never heard of an endocrinologist not treating a pg patient (or an OB who treats thyroids), or of *any* doctor considering a TSH of 10 to be normal!! I really wish there was something I could do to put some compassion into them for you, but just know that I’m pulling for you and and always thinking of you and hoping that this pregnancy will result in a beautiful take-home baby for you

I wish the PCP’s thinking a 10 was fine thing was a joke. My poor MIL trusts every word her doctor says and has clearly been battling untreated hypo weight gain, lethargy, and depression for YEARS. Finally one time I asked if I could take a look at her blood work. Her TSH was nearly 11. I told her to call her doctor right away and demand treatment. She called me back a few days later and said, “The doctor said that’s fine for somebody my age (late 50s). He doesn’t like making people ‘dependent on pills.’ He gave me a new diet to try.” I was so furious I could barely speak. He finally started her on a tiny dose of generic levo a few months ago… because her TSH was over 15! Fist to forehead, fist to forehead…

I am so sorry for that terrible run around. I remember also being in tears begging to be referred to a doctor and getting nowhere. It’s just awful. I’m so sorry. It’s not what you need when you have enough to contend with just keeping yourself at a sane level of worry.
Just came back from a movie–Wadjda with my spouse and daughter. It’s had great reviews (directed by a Saudi woman) and is about a girl who wants a bike. But I hadn’t anticipated how the subplot would unfold–with the theme of whether the father would take a second wife because Wadjda’s mother can’t have any more having nearly died giving birth to her. I’ve come home in rather a foul mood. I know exactly what you mean about hearing what your spouse says–it seems all our conversations go like that.

I know. He says sweet things, kind things, honest things, heartfelt things, and all I can do is turn them into insults I continuously lob at myself. Being the healthy man in an infertile couple must be a pretty lonely and isolating place to be…

I don’t know if this will comfort you or annoy you, I’m not presuming to understand how u feel, but maybe it will reassure you.
I was diagnosed with hypothyroidism when I was 17. I had also miscarried before (at 13 wks) and became pregnant at 23. My doctor referred mevto an autoimmune specialist due to my thyroid issues and scared me by saying there could be complications with my pregnancy etc.
Long story short, I had very little intervention. Monthly blood tests to monitor levels and went on to have a healthy baby at 37 week’s with no complications. My dose changed slightly.
Remember your tsh is your body revving up to produce the right amount, so that’s actually a good sign that it’s adjusting to changes. I personally don’t tthink a few weeks of a wait for your dose to be adjusted is too much for your body. I think it can handle that. The reason I believe this is this: when I was first diagnosed and tookcorrect dosage I had palpitations a lot. So my doctor suggested I take slightly less than prescribed, so for years I’ve took 25mcg less than “normal”, and that was even before and during pregnancy.
I’m not trying to trivialize your fears, I understand the main fear and why you want to be safe, but I hope what I’ve said helps you realise our bodies can be quite robust xxx

Having experienced TSH spikes in the past that left me unable to remember my husband’s name or what a telephone was used for, I’m not exactly one that’s willing to chance it for either my health or the embryo’s. That said, I do know enough to know that nothing about thyroid disease is immediate, and a spiking TSH doesn’t mean that my T4 is already dangerously low. I just wish my doctors cared a quarter as much about my health and well-being as I do. But, I guess fear of litigation and stepping on one another’s toes is much more important to them. (Unless you’re a squeaky wheel and fight with every last bit of energy you’ve got.)

Fact is, after 3 miscarriages, IVF, and 4 years of this, I will never be able to believe that things will go as they should. I need to practice regret management now, so that I can live with myself in the future. Sure, the thyroid issues may have nothing to do with my losses and may not threaten this pregnancy, but I will never know either way. I owe it to myself to do everything I can do to correct that issue so that I don’t have to ask myself “What if I had fought harder?” if this pregnancy does indeed end like all the others.

Unfortunately, one person’s success has zero impact on my own story. I prove that time and time again.

I do appreciate your input and your well wishes though. And, hope that in some future date if someone’s experiencing a similar struggle and needs to hear positive words of support that your comment helps. Thanks, hun!

You so aren’t crazy. That first nurse is a worthless sack of crap. I am so sorry. She must be best friends with my beta of 134 and progesterone of 0.7 at 5w3ds is super nurse that I encountered last month. UGGGGG. I am glad you got the meds in the end but I am mad on your behalf for having to fight so hard. It makes you wonder what happens to women who either aren’t as informed or are not willing to put aside politeness for their own sake. UGGGG.

It does make you wonder that, but you know what? After years of this I think I have figured out exactly what happens to those women that aren’t informed or are afraid of speaking up and/or questioning their doctors. They go on to have perfectly happy and healthy and carefree pregnancies. I mean, it sure seems like that most of the time… :eyeroll:

Anyway, yea. The first nurse was the phone triage nurse. I’ve decided I will never again deal with her. Will call, tell her to have MY nurse call me back, and will wait. So much less anxiety that way!